Tag Archives: parenting

Michael and Hans (I mean, Pierre) Part 3

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Eight years ago our family hosted a party to celebrate Jack’s second transplant birthday. There was a cake and balloons and (like any good party) a table so that people could sign up for the Bone Marrow Registry. 79 people signed up that day. One was a friend of a friend, Michael Steiner. I’ve shared his story before, but it continues — here’s the update:

So I did the marrow (“Drill baby! Drill!”) donation back in September 2015. Then a few months after that I did the white blood cell donation (“Spin baby! Spin!”) for my cousin, … because we’re all cousins. #ScienceIsReal

I knew he was in Europe, but I guessed he was in Germany (biggest country, my dad is ethnically German… so odds were on Deutschland over all others.). But it turns out Hans, is not Hans; he’s Pierre. Yes, he’s in France. I was thinking I would call him Francois, but I can never be sure to spell that with i-o or o-i. Oy!

Anyway, I found out the France part because Be The Match called me again in December 2016 to do another white blood cell donation, but this time a nurse would jack me up with some filgrastim over 5 days before the “harvest”. The filgrastim would make my body over-produce the white blood cells so the machine can spin out a better dose for Pierre.

The procedure was set for February 1st (aka “February Fools’ Day”).

I didn’t have many side-effects from the filgrastim. Only some sleeplessness and a low fever because the body gets confused with all those white blood cells around. “What’s the matter? What’s with all the white blood cells? Are we sick? What the heck?” HA! I got to stay in a hotel in the city the night before the harvest because my appointment with the needles was at 7:30am.

Since white blood cells only last a few days, Pierre got the “booster pack” within 24 hours of the harvest. I thought that was pretty cool.

Unfortunately, I’m very unlikely to be able to help Pierre again, at least with regards to his Leukemia. My handler at Be The Match told me I’m “getting to old for this s**t.” (Roger Murtaugh – Lethal Weapon). But seriously, I can be in great shape, but I’m already 45, and my cells aren’t going to be helpful to Pierre after a certain age. (I imagine the bag of white blood cells arriving in France and them saying “Ça sent un vieil homme.” Don’t you love how “old” in French looks like “vile”?)

I probably won’t get an update on how Pierre is doing, and I don’t need one. I hope he hangs in there for a long time, but I know how it all ends!

A big merci beaucoup to Jesse Cappello Torrey who had that “swab party” those years ago.

Merci to you Michael!!!!

Love, Jess

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The Eagle has landed. Smiles and Duct Tape has been released. It’s out of my hands and out there for all to see – and read – and judge – AHHHHHHHHH!

I have lived my life trying to keep expectations low. If you strive for an A and end up with a B, you’re disappointed. If you strive for a C and end up with a B, you’re thrilled. I‘ve been a solid B most of my life and proud of that accomplishment. I pat myself on the back almost every day. Even days when I’m making dinner still unshowered in my yoga pants, if my family made it through the day and is being fed, it’s been a successful day!

Smiles and Duct Tape is the first time that people have rather high expectations for me. I do think that my writing has improved over the last ten years, and I’m proud of my 500 word essays on this blog, but the book is 49,000 words – in a row, it’s about the worst 1000 days our family has ever been through, AND I’ve never written a book. I hope people are looking for a solid C performance and give me a big high-five when they discover it’s a B, maybe B+.

If you read Smiles and Duct Tape and enjoy it, I encourage you to write a review on Amazon and/or Goodreads. If you read it and think I should stick to 500 words at a time, please keep that information to yourself.

The book is currently available at Deeds Publishing, at our beautiful local bookstore WORDS, Amazon (paperback and eBook) and my basement. Please contact me for quantity purchases (i.e. book clubs/super fun holiday gifts for the whole family) and I will give you a deal.

Love, Jess

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Guardianship – Jack made it easy(ish)

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I guess there are worse reasons to take your eighteen-year-old son to court, BUT today was a tough day.

When a person turns 18, they legally become an adult and are expected to make decisions about their life – medical treatment, finances, education, etc. Guardianship is a legal proceeding in which the court is asked to find the person in question unable to manage his/her affairs effectively. A guardian (or guardians) is/are appointed to make all decisions on behalf of the person.

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Today Dan, Jack and I went to court to prove to the State of NJ that Jack is too disabled to care for himself. He is too limited to make decisions regarding his care and well-being. He is (and will always be) dependent on us. Heartbreaking.

Like most heartbreaking things having to do with Jack – it was Jack that made it bearable. He was in a great mood this morning as we got him scrubbed and ready to make a good impression on the judge. He smiled the whole way to Newark, eager to see his buddy Adam (our lawyer) and to meet a few new friends. Jack always loves an adventure.

When we told Jack it was going to be like Law and Order he didn’t seem impressed, but when Dan said, “I wonder if Judge Judy works here”, our boy laughed and laughed. It’s hard to take things too seriously when you have Jack chuckling next to you, but when we needed to go in front of the judge, I could feel the tears start filling my eyes.

Everything went off without a hitch. We just needed to sit as the judge read through all the paperwork – proof that Jack needs us to be his legal guardians (doctor’s notes, school information, interviews with us and others who know Jack). I did my best to ignore the details of Jack’s limitations get repeated over and over again. I’ve developed a talent of keeping a smile on my face and nodding politely as I block out information. Dan’s bruised hand was the only evidence that any of the words actually made it to my ears.

I’ve accepted Jack’s challenges and understand that, as a special family, we need to do this stuff. The only thing that really bothered me about the whole experience today was the use of the word, incapacitated. It was used through the hearing over and over and over again.

incapacitated
(adjective)
 Ivan did not expect to be incapacitated for more than a few days: disabled, debilitated,           indisposed, unfit, impaired; immobilized, paralyzed, out of action, out of commission,    hors de combat; informal laid up. ANTONYMS fit.

I know that words need to be attached to circumstances, but of all things to call Jack — incapacitated is not one I would ever use. He’s more full of life than anyone I know. I understand that he needs (and will likely always need) our care, but as I heard that word I couldn’t help but want to stand up and scream “I OBJECT!”

I didn’t – I played the role of calm mom and didn’t even let myself even cry until I kissed Dan goodbye and dropped Jack safely off at school. I am so #$%^ing glad that it’s over.

Love, Jess (proud guardian of JackO)

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Jack makes things easy(ish)

10 days.

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Ten days until the release of Smiles and Duct Tape and I’m suddenly in a full-blown panic.

Here’s the thing – As excited as I am to get the book out there, I’m nervous about letting it go. I keep wondering if I’ve forgotten anything or anyone. I’m used to writing 500-word blog posts that I can edit if needed – a book feels so permanent. I’m also worried about the content. I’ve shared our family through the blog for almost ten years, and have been honest, but not quite THIS honest. The book is pretty raw. It follows the first 1000 days of our journey with ALD, and I don’t hold back on the reality of what we went through. I hope that readers appreciate the candor.

If you know our family (or read this blog), you know the ending. You know that Jack survived transplant and so did our family. You know that Dan and I are still married and that Anna has turned into a remarkable young woman. You know that the Torreys are pretty much back to being the family we once were – just with a few complicated issues.

So why did I write this book?

1.) I told people I was writing a book and have a history of not finishing projects. There was no way I was going to “pull a Jess” with this.

2.) I wanted to thank everyone who has helped our family and I’ve never been good with thank you notes.

3.) For typical/normal/non-challenged (insert appropriate PC word here) families to see that differently-abled/complicated/special (insert appropriate PC word here) families are just families.

4.) I want Smiles and Duct Tape to finds it’s way to families going through crisis. Not necessarily ALD (or even illness),  just lives that have turned upside-down. I want to share how our family managed to survive.

So, the book is written and in ten days is will be out there. I’m nervous, excited, and kinda feel like I’m going to throw up.

To PRE-ORDER your very own copy of Smiles and Duct Tape – CLICK HERE!

Love, Jess

PS I’m happy to speak at schools or book clubs or to anyone that might want to hear about how our family survived and accepted a new normal. Please email me to something up.

Meet the Torreys

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It’s getting closer.

The manuscript has been sent to the printer and by the end of this week we should have a copy of SMILES AND DUCT TAPE in our hands. Not your hands . . . you need to wait a tiny bit longer. The current release date is October 24. That’s two weeks folks!

In the meantime I am working on ways to promote the book and one idea I stumbled across was making a slideshow to introduce the readers to the book. SMILES AND DUCT TAPE is a book about our family. I would like to introduce you to The Torreys.

 

 

Love, Jess

If you would like to PRE-ORDER your copy of SMILES AND DUCT TAPE, please CLICK HERE.

 

ps I tried to add these images, but it was too late;(

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A Birthday for Bananz!

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There are no parenting books that recommend being friends with your teenager. We are always told that our responsibility as parents is to parent.

My problem is that I do so much parenting with Jack. I need to be ON all the time. Missing the medication or hydration could be disastrous, and when he needs a diaper change, he needs a diaper change. I can’t slack – not even for a minute (this is not completely true. I do slack, thanks to a wonderful team of people, but I need to arrange so that I can slack).

When it comes to parenting Anna, she tends to direct. She tells me when to call the SAT/ACT tutor and when I need to drive her to school. She announces when it’s time for a new curfew (THAT we did need to negotiate), but also knows when she needs to call it a night so that she has time to work on her summer assignments. And, although we spend many dinner conversations discussing Anna’s schoolwork, we are rarely asked to help or edit. It’s not just because she has surpassed our expertise in many subjects, it’s because she has always had to be independent.

This is not to say that we do not spend quality time together. Anna and I spend hours watching and discussing groundbreaking television (i.e. The Challenge on MTV) and pouring through high school gossip. Anna and Dan also have a close relationship. He isn’t as fond of the rumor talk as I am, but he and Anna can discuss history or lacrosse stats all day long. And, watching Anna snuggle with her brother is one of the most magical things on the planet.

Anna has turned out to be a remarkable human and I love being her mother/friend. I just look at her, and I am in awe. Brilliant, beautiful, patient, compassionate, kind and happy. Everything I ever hoped my daughter would be.

Dan and I get all sorts of credit for raising this unbelievable child, when the truth is that Anna really deserves most of the credit.

Happy Birthday Bananz!! Sweet 16!!!

Love, Mom

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tiny, hairy, and perfect

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She is a gray shingled cottage with a blue door. Far smaller than our Maplewood center hall colonial, but each summer we fill her up and call her home for the month of August.

Two bedrooms and one bathroom is tight for our family of six. The dogs seem quite large when navigating around the space. And, Keegan’s hair can be considered an extra occupant, taking on a life of it’s own. Labs shed, and when contained within our small quarters, a thick layer of blond is added to everything within hours. Luckily, a benefit of a small home, it only takes a few minutes to pass the vacuum. It’s one of my only chores on Block Island.

The fridge is full of snacks and beverages and the closets are stacked with bathing suits, jeans and teeshirts. There’s always a puzzle in progress on the table and Anna has piles of summer homework littering the living room. I try to tidy up the mess, but it always looks a little chaotic. As we get into vacation mode, it bothers me less and less. On slow days, Dan often sets up a tent next to the clothes-line providing us an extra room, perfect for reading or taking an afternoon nap.

The number of guests in the cottage varies. With the exception of last summer (Dan’s magical Garden Leave), Dan is not able to come for the whole month. He dutifully goes back and forth on weekends from NJ to RI for the first two weeks. Anna opened it up further with her Outward Bound trip cutting into August. It allowed Jack, Keegan, Finn and I to have a few slow days of quiet and then Mymom (my mom) came for a visit. The following week Anna arrived with 3 of the 5 Mackays. The cottage was jumping as the amount of teenagers outnumbered the amount of old folks. Just yesterday, Anna’s friend, Natalie, arrived for her second time on Block Island. It’s great to have her here again, but Dan is now here full time and five humans gets a little tight. Thankfully, my in-laws are gracious enough to allow kids to stay in the bunk room. Five in the cottage might have just ripped the vacation mode right out of me.

The cottage is not the only house full of friends and family within the stone walls of the property. My in-laws have a house full from Memorial Day to Labor Day and we’ve gotten to overlap with tons of family. Their house is just steps away from the little cottage and it’s always full of commotion and energy. We head over for family dinners and too many cocktails on the deck. Such a treat to have some extra square footage and great family right next door.

A friend called last night and asked about our vacation, “How’s the cottage?”

I looked around the little cottage and smiled, “It’s tiny, hairy and perfect.”

Thank you PopPop and Sue for our August home.

Love, Jess